Whenever I tell our daughter, Emily's, story to people I most commonly get a response of: "I don't know how you do it?" I am always puzzled by this response because I don't know how not to do it? I guess I could do nothing for Emily and she would have a poor quality of life, or I could put her into an institution, or we could just give up and let her wither away. But none of those options ever have or will cross my mind. Emily is our first child so I guess I didn't realize how life could be different until her sister came along.

Just like the dynamics of any family, our two girls are so incredibly different that there is no true comparison of apples to apples. So when I am asked by a friend or stranger the question of "how do you do it?" I simply reply that "my life has challenges just like theirs and that you just deal with what you have been dealt". I also remember that not one single person in this world totally knows what it is like to walk in my shoes and I don't know what it is like to walk in theirs. Although others may experience similar struggles, their life can never truly be compared to mine.

I appreciate empathy when times are tough and celebrate when times are great. I try to think of our life as being the 'norm' and that makes it easier for me to get through the tough times. So, no matter how similar a situation might seem to you just remember that life is not always a comparison of apples to apples. Reach out to those in need and tell them it WILL get better and show your support for their struggles. But please do not assume that you understand what they are going through for they are truly the only ones who know how they feel.

Why is it that we tend to focus so much on our jobs, family, projects, etc. and forget that we are just as important to take care of? When I was growing up life seemed so much more simple than it is in today's world. It seems today there are so many more activities that kids are involved in yet much less time available in each day. We have become a society of on-the-goer's and everything is about the hustle and bustle with little to no downtime.

If we do not find the time for ourselves and put it on a calendar then chances are we won't get to take that time. Two years ago I was getting really burnt out at being a stay-at-home mom. I was angry because staying home was not a choice that I had made for me. I was staying home because our oldest daughter, Emily, needed me to take her to all of her doctor's appointments and daily therapies. I was frustrated because just months before Emily arrived I had finally completed my four year degree and was on a career path.

So two years ago I decided to take my first vacation - alone! I went to Florida and stayed with a family friend and really took the time to enjoy not being a mom and reconnect with my inner spirit. It was at this point that I started to realize how important it is to take time for yourself everyday, even if it is for only a few minutes.

When I begin to get that feeling again of being burnt out I remind myself that it is okay to put everything on hold to take care of me. Other things can wait, but if I don't take care of myself and I get sick, then life will be that much more challenging for us all. So here are some of the things that I do to take care of me:

I take a shower and get ready without anyone in the bathroom everyday (no kids)

We have a weekly cleaning person come and clean so that I can focus on more important tasks

I get a massage or pedicure every other month

I treat myself to a nice haircut every six weeks or so

Sometimes I go out to eat or shopping alone

I take time to chat with friends online or on the phone

I go to the gym at least 3 times a week - sometimes more

I treat myself to a nice glass of wine at the end of the day

and so much more....

On the days and weeks that I forget to take time for myself I find that I get more agitated at things in general. I can not stress enough how important it is to pencil ourselves into our busy calendars! So next time you are feeling down, crabby, or just burnt out remind yourself that it is okay to take the time to treat yourself and refresh you mind, body, and spirit - you need it!

I recently ran into a friend of mine and our conversation seemed to focus on the fear of attachment. I can completely identify with this fear since I had a fear of getting to close to Emily when she was a newborn and so sick. For some reason I was so afraid of loving her because we weren't even sure that she was going to live long. All of the possible diagnosis that we were told for her only had her living until the age of two. I was so afraid that if I loved her I would lose her and I did not think I could survive that kind of pain.

They are many other ways people can fear attachment. I have seen it happen in families where their are children from a previous marriage brought together by two people. It is feared by the grandparent of step-grandchild that the marriage might not last and they will no longer be able to see that step-grandchild.

Fear happens when a couple is trying so hard to have a baby and with each pregnancy it ends in sadness of a lost child. Fear also happens when a couple is trying so hard to adopt and as they get word that their new baby has been born it is crushed by the news of the mother decided to keep him/her. Fear also happens when a child is diagnosed with a disease and you know that their time on earth is limited, but you don't know for how long.

So why is it that we are so consumed with fear in this world? How can we change things? Well, I don't have the answer to that question, but I have some help. We must change the way we think about life. We need to appreciate every waking moment we have with each other and with the ones we love. We must remember to cherish every day with each other and turn the rest over to the universe. Once we begin to let go, we open ourselves up to receive. Don't let you life be consumed with fear, let it go and see what happens.

Oh, where do I even begin? Being a parent is definitely the hardest "job" I have even done. I always wanted to have children and thought that it couldn't be any harder than babysitting - right? Boy was I ever wrong. No matter what your child's challenges are it is difficult. I have people say to me all of the time "how do you do it, how do you survive the constant roller coaster ride, the lack of sleep, the unknown?". I say to them, "you just do it". I could give up as a parent and turn my child over to foster care or make her a ward of the state or even institutionalize her, but what good would that do? I am still her mother and would long for her, to hold her, to try to make things better for her, to love her unconditionally.

In our house each day is a new challenge. Our daughter, Emily struggles with intractable multi-focal complex partial seizures (wow that is a mouth full). What that means in laymen terms is that her seizures are not controlled by medication. And what that means to Emily is that she has to take five different seizure medications plus the Vagus Nerve Stimulator (VNS) that she has implanted in her chest and neck for seizure control.

In addition to the seizures Emily struggles with cerebral palsy (hypotonia), global developmental delays, cortical visual impairment, gastronomy tube (g-tube) and major sleeping issues. The cause for all of Emily's struggles is still unknown. She has gone through literally hundreds of tests to try to find a reason for her seizures and everything else. Nothing has been determined on a metabolic, genetic, or any other level to point to the reason for all this chaos in her brain and body.

Just like parenting our second child, Isabelle, Emily has her ups and downs. Some days I even feel Isabelle is harder to parent than her sister. Since Emily's diagnosis is consider idiopathic (no known cause) it makes it even harder for us to figure out how to treat things. We have no way to predict what she will be able to do or not do in the future. So we have to hold on to our hopes and dreams of what we want her to do. We have to stay positive and remember that life is like a roller coaster and is full of ups and downs no matter if you have medical struggles or not.

If you are a parent of a child with special needs then you know what I am talking about here in this blog. You also need to know that you are not alone in this battle and there is at least one other person who gets your pain. I have never said to myself "why me, why Emily". I have though be sad and even angry at the situation and sometimes even at her. This anger is normal and acknowledging it is part of the process of dealing with a child who's life is not what you had hoped it to be. Anger is not okay when it is directed at the child. I know that I said that I sometimes am mad at Emily, but it is more because I can't understand what she is going through and that upsets me.

Having a child like Emily has been a great blessing too. Without Emily I would probably still be on the same path in life I was before and not liking the career path I had chosen. Emily has opened my eyes up to the world of possibility and I have learned from her so many things. I don't have to remind myself how lucky I am to be Emily's mom. I know that she is here for a purpose and I am honored to be a part of that journey. When I think of Emily I here a song in my head. The song is called "In My Daughter's Eyes" by Martina McBride:

In my daughter's eyes I am a heroI am strong and wise and I know no fearBut the truth is plain to seeShe was sent to rescue meI see who I wanna beIn my daughter's eyes

In my daughter's eyes everyone is equalDarkness turns to light and theworld is at peaceThis miracle God gave to me gives mestrength when I am weakI find reason to believeIn my daughter's eyes

And when she wraps her handaround my fingerOh it puts a smile in my heartEverything becomes a little clearerI realize what life is all about

It's hangin' on when your hearthas had enoughIt's giving more when you feel like giving upI've seen the lightIt's in my daughter's eyes

In my daughter's eyes I can see the futureA reflection of who I am and what will beThough she'll grow and someday leaveMaybe raise a familyWhen I'm gone I hope you see how happyshe made meFor I'll be thereIn my daughter's eyes

So when life is hard and you are feeling beat down by all of your challenges as a parent, remember it will get better. You have been chosen to be the parent of the special child and you are not alone on your journey.

The purpose of this Blog site will be to help parents of special needs children connect with each other and also to find resources for themselves and their children. I plan to provide real life experiences and reviews out here and encourage you to check in frequently for new posts.

I would like this site to be an open forum where parents can feel free to post comments about things I write about or products that I have listed out here. I am a mother of two beautiful girls: Emily age four and Isabelle age 19 months. Our daughter Emily is challenged with intractable multi-focal complex partial seizures, cerebral palsy with hypotonia, cortical visual impairment, global delays, gastronomy tube, and reflux. We have taken Emily to many traditional Western medicine doctors and specialist as well as many Eastern and non-traditional specialist. I plan to provide those stories and their results out here. We have also tried and own many medical equipment pieces and I plan to Blog on them as well.

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I am a mom who is going through many emotional and spiritual journeys and transformations right now. This is where I want to share them with the world and hopefully help others like me on journeys too.